My Celiac Disease is not a choice: An essay from my personal archives

****Written in the Fall of 2012 when I noticed a lot of trend pieces about going gluten-free circulating and now edited and posted. No it isn’t about being a parent, but I look down at my 4 month old boy and hope and pray that he doesn’t have celiac disease.****

When I was 13 my mother found out she couldn’t eat gluten, it was then that she realized that I was probably in the same situation given my symptoms and the state of my health. I was given a clinical diagnosis (by a doctor) as having a gluten sensitivity. When I was 19 it became apparent that it was not just a sensitivity and I started undergoing various invasive tests for the doctors to finally confirm that at age 22 I in fact had Celiac Disease.

While I do welcome the fact that so many more people are aware of and understand what it means when I say cannot eat gluten, I have been torn for some time about how I feel about people who take on a gluten-free diet for what appears to be no medical reason at all. The good side of it is that the increased demand  has led to more products on the shelves and made it easier for me to find good gluten-free alternatives. The bad side of it the it means that I all too often encounter ignorant people who don’t understand that there are many of us who avoid gluten not out of choice, but out of necessity.

Today at my office something happened that really upset me and demonstrates this point all too well. Cupcakes were being given out to all the staff. A woman handing them out asked if I wanted one.

“No, not unless you have gluten-free ones. I can’t have gluten.” (Given that there are close to 1,000 people in my office, it is not inconceivable that the organizers would have actually made arrangements for people who can’t have gluten).

Her response was,”No we don’t have gluten-free, but what’s a little upset tummy for a cupcake?” She comically rubbed her stomach as she said this.

If looks could kill, that woman would have been dead on the floor at that moment, the audacity of her comment left me almost speechless for a second as I ran through what the appropriate response to such an ignorant comment was (given that I was in a professional building and these people are my coworkers I felt I had to maintain an appropriate demeanor).

My brain finally started functioning again and I responded in what was a rather icy tone: “Actually it wouldn’t be a ‘little upset stomach’ it would be a severe reaction.”

In the past people accepted it was an allergy when I said I couldn’t eat gluten. It was assumed to be a medical condition. Because who would give up delicious gluten for no reason? Now because so many people are doing Gluten Free diets by choice, I find myself encountering more roadblocks. Others assume I am just going along with the fad. I am not going along with a “fad”. Being gluten-free every day of my life is not a choice. It is a necessity and it is not always easy.

There are days when I wish I could eat anything because the constant stress and anxiety that I feel when I eat something not prepared in my own home gnaws away at me. You may not think that it is a big deal, but imagine if every time you had to eat somewhere you had to run through a mental check list: What is in this? How was this prepared? Is there a chance of cross-contamination? Does this person really know what gluten is and how it can be hidden in food? Will they be wrong and will I suffer immensely in a couple of hours? And then take all those questions and realize that you have now grill your waiter or host with them? It’s enough to make eating away from home seem like more of a pain than it is worth.

Every time I eat out at a restaurant, a family or friend’s house, a wedding or a party, I am riddled with anxiety about what I put in my mouth. I have been to professionally catered events where the chef didn’t even understand what gluten was. In such a case, how am I to feel confident that anything I put in my mouth is actually safe? I couldn’t and I ended up very, very sick.

There are times when I feel like an imposition on everyone in my life. I have to constantly ask people to tell me exactly what is in each dish at a potluck. Because of this, I have been known to only put things on my plate that I know are gluten-free because the effort to ask everyone what is in every dish is too much to go through. At those meals my plate ends up being cut up raw veggies from a veggie platter and whatever dish I brought.

If I don’t maintain a strict gluten-free diet I experience rather immediate symptoms including abdominal pain so extreme that I cannot stand up, nausea, heart burn, and the worst being hours of excessive/explosive diarrhea (just to name a few).

If I have prolonged exposure to gluten what happens to me affects almost every system in my body. Before I was diagnosed I was in near constant abdominal discomfort. I was being investigated for low iron, and nutritional deficiencies.

I had headaches. I had sleeping problems including night terrors. I was always tired.

I was constantly getting sick and contracting infections because my immune system was compromised as I was in a state of malnutrition. Even though I was eating, my intestines were so damaged that they didn’t absorb the nutrients in my food.

When I finally had a biopsy of my stomach and duodenum, the gastroenterologist said that my entire stomach lining was scar tissue.

I even had mental health problems and was prescribed powerful anti-psychotic medications to deal with a bi-polar disorder which I didn’t have.

When I stopped eating gluten, the change in my quality of life was so profound that I couldn’t  believe that it was as “simple” as a diet change. But of course, as you can see that diet change is not so simple. There are days when I long so much that to have a normal life that I have actually broken town and cried.

For me Celiac Disease is not a choice. It is not a fad. Eating gluten-free is the only way I can hope that this disease will not end my life early or cause any of the other long-term health effects that can occur with this disease – cancer of the digestive tract, osteoporosis, infertility, and mental and nervous system disorders to name a few.

I am lucky to have a good support network in my life. My mother and several family members also cannot eat gluten (which is not surprising given its genetic link). My husband who knew nothing about Celiac Disease when we first started dating can read any food label and know whether or not it is okay, and he could do this within about 6 months of us dating. My in-laws as well have been extremely supportive and have really learned how to prepare food that I can eat. The fact that they really take the effort to adjust recipes and try to make sure that I can eat most, if not all, the food they serve shows me how blessed I am to have them in my life. I have even had my father in law explain to a waiter on my behalf why you can’t place the gluten-free bread on the same plate as the regular bread – the waiter’s response illustrates my frustration perfectly. “Oh, people are actually allergic to gluten? I thought it was just a taste preference.”

Please understand that when I say I can’t have gluten, it is not a fad for me. And if you tell me you are ‘trying gluten free’ because you think it is the latest trick to lose weight or some celebrity is doing it, I will not be understanding because for me this is my disease.

You wouldn’t inject insulin if you didn’t have diabetes and that is how I view this new “fad” of going gluten-free. Maybe it isn’t the best comparison but it’s the closest I can come up with to describe how I feel. For me the stakes are too high for me to not maintain this diet.

So yes, I have a problem when the only treatment to my disease has become fashionable because I have to wonder what will happen to me and other people living with Celiac Disease when it is no longer fashionable?